swalker
Very helpful member
- Joined
- Dec 11, 2014
- Messages
- 1,576
- Reason
- DX MND
- Diagnosis
- 07/2014
- Country
- US
- State
- CO
- City
- Vail
I saw the pulmonologist this week. They did an arterial blood gas and spirometry. They have stopped doing the full up Pulmonary Function Test because it just wears me out too much and does not provide meaningful information.
The good news is that my arterial blood gas numbers are ok. In particular, oxygen saturation and co2 levels are acceptable (though co2 has been climbing, it is still acceptable). The doctor says no bipap yet.
The bad news is my best spirometry result for forced vital capacity was 31%, which is a slight decrease from the previous visit.
His conclusion is that my lungs are great but the bellows mechanism does not work very well at all
My wife peeked at the doctors notes and read that I am in denial. I really don't think I am. I accept I have a terminal illness and the end will not be pretty. The doctor has had very frank conversations with me (both with and without my wife being present) about what the end will be like.
Shortly after diagnosis I decided that I would live each day to its fullest and intentionally have a cheerful attitude, accepting my limitations with as much grace as I can muster. Certainly I fall short sometimes, but then I pick up the pieces and move forward the best I can. I believe this comes across as denial sometimes and perhaps that is what the doctor is sensing. Yet, his note makes me rethink the level of acceptance I really do have. I will continue to ponder that.
The doctor is near insistent that we move to a substantially lower elevation. We live at 8500 feet and he wants us near sea level. His opinion is that I don't need to be at a lower elevation right now, but that when there is a respiratory crisis I will. Since we can't predict when the respiratory crisis will occur, he says move now.
I love the mountains and living at high altitude. My friends and my church are here. I don't plan to move. I would rather have higher quality of life here than take steps to live longer in a place I don't enjoy as much. My wife, on the other hand, has already contacted three real estate agents about listing our house for sale.
Hmmm. We will have to see how this plays out
Steve
The good news is that my arterial blood gas numbers are ok. In particular, oxygen saturation and co2 levels are acceptable (though co2 has been climbing, it is still acceptable). The doctor says no bipap yet.
The bad news is my best spirometry result for forced vital capacity was 31%, which is a slight decrease from the previous visit.
His conclusion is that my lungs are great but the bellows mechanism does not work very well at all
My wife peeked at the doctors notes and read that I am in denial. I really don't think I am. I accept I have a terminal illness and the end will not be pretty. The doctor has had very frank conversations with me (both with and without my wife being present) about what the end will be like.
Shortly after diagnosis I decided that I would live each day to its fullest and intentionally have a cheerful attitude, accepting my limitations with as much grace as I can muster. Certainly I fall short sometimes, but then I pick up the pieces and move forward the best I can. I believe this comes across as denial sometimes and perhaps that is what the doctor is sensing. Yet, his note makes me rethink the level of acceptance I really do have. I will continue to ponder that.
The doctor is near insistent that we move to a substantially lower elevation. We live at 8500 feet and he wants us near sea level. His opinion is that I don't need to be at a lower elevation right now, but that when there is a respiratory crisis I will. Since we can't predict when the respiratory crisis will occur, he says move now.
I love the mountains and living at high altitude. My friends and my church are here. I don't plan to move. I would rather have higher quality of life here than take steps to live longer in a place I don't enjoy as much. My wife, on the other hand, has already contacted three real estate agents about listing our house for sale.
Hmmm. We will have to see how this plays out
Steve